Awesome Guy

Sweet Sixteen

The phone rings and I can see before I reach for it that the call is coming from Declan's school.  Perhaps it is the school secretary calling to give us a date for the next parent meeting.  The next meeting we have is going to be a big one; we will have a lot of work to do to plan for a smooth transition to middle school.

Middle school.  The thought of it makes me break out in hives.  Of course, I am conjuring my own, awkward memories of middle school, but I am also drawing from Tova's days in that bastion of hormones, pimples, and social jockeying.  As soon as she was finished and entered high school, she seemed to have shed a burden like phoenix rising from the ashes.  The difference was palpable, as if she was free to be who she is and always was before the pressures of middle school sent her into hiding.  How, I think, will I get Declan through unscathed?

I pick up the phone and it is Sandra, the school nurse.  We are friends by way of a mutual friend, but also because we communicate so often about Declan.  He tends to use her office as a sanctuary; a place to go when things get too overwhelming.  Recently, he has also been reporting to her when he has unusual sensations in his head.  We are not certain if the short, unusual episodes he is having has anything to do with seizures, but we honor them to be certain for his next trip to the doctor. 

"Hi Jen," she says casually.  "I have Declan with me and he is having that feeling again."

"What is he saying?"

"He says that they're having a party in his head."  He is referring to perhaps intermittant flashing, sounds, or twinges, as if there really was a party going on.  Other times, when the sensations move from one part of his head to another, he says that they are "playing tag" up there.  His choice of words gives us a better understanding of what it must be like.

"Did he say anything else about it?" I asked

"Well," Sandra said, "I asked him if he could be more descriptive about the party, and after some thought, he said it could be a sweet sixteen."

We laugh at statements like these.  In fact, I ask Sandra if we had ruled out anniversaries and bar mitzvahs.  It is the ernestness with which he shares his very literal answers that make communicating with him so fascinating and charming.  His intentions are pure and his trust is without any reserve. But I am conflicted.  I know that middle school is rapidly approaching, and despite our best efforts to prepare him, these beautiful moments may well be the same ones that eventually hurt him.

 

 

 

Tell It to the Board

 

I am driving home from the first of two full day teacher workshops that I will run this week in late August.  Three days ago I was on the beach in Wellfleet, Massachussetts listening to the water crashing, feeling the sun on my skin, smelling the ocean air and a welcome blend of sunblock fragrances.  Now, I play the classical channel on XM to keep myself from completely losing it to the anxiety and disorientation that I feel.  Making the shift from summer to fall is hard for everyone; I too cannot seem to shift my body and mind fast enough to engage in the way I know I am usually capable.  My mother, who referring to this phenomenon meant to say "re-entry," once mistakenly said, "rear-entry."  I think the latter term decribes the feeling best.

I pull into our driveway and park.  I glance back at the bags I took with me to work and think better of taking them out right now.  I leave the car and gear behind me and walk into our house.  Tova and her friend Emma are at the computer looking at itunes and playing music.  Declan is at the large white wipe-off board that sits on the clumsy wooden easel we bought at IKEA.  Nothing unusual here.  I go upstairs to change, still thinking about the board.  I got my money's worth from that purchase.  I remember buying it at Staples a few years ago, and though I bought it with the intention of working with Declan on it, I never dreamed of what an incredible tool it would actually become.  I often scan the aisles of office and educational supply stores looking for unique possibilities for teaching Declan something new.  It's impressive what one can do with a set of library book envelopes! But the board has become an institution in our household.  Since it's arrival, it has played many roles, but mostly, it has become a sounding board for Declan.  It is here where we get glimpses into what he is thinking, much more than we would ever hear from asking.  He approaches the board many times throughout the day and just puts his thoughts down.  One time, he used it to express his fear of a character on SpongeBob, which triggered a conversation about what is real and what is fantasy.  Another time, Declan used it to create a multiple choice quiz for the rest of the family on how to handle different social situations. It was clear that time, that he was working through his own new learnings.

As I change into my comfortable summer shorts, I realize something.  The board is really a place where he can make his thoughts visually accessible to him.  Declan struggles with processing language and information, and the board gives him yet another way to work though new, difficult concepts.  Further, he gets to do it at his own pace, and can erase whatever he likes in an instant.  He is in control.  I walk downstairs, now eager to see what deducing he has left behind for us this time.  What I see is a list of what he has done and needs to do for the rest of the day, each job descibed in delightfully simple terms.  Eat breakfast, go to school, come home.  It looks so doable, yet school and days filled with to-do's are so difficult for him.  But there it is, laid out in a list just like he learned from his favorite characters Frog and Toad.  The tao of Frog and Toad, I think to myself.  I smiled and let my shoulders drop to where they should be, as I often do when I learn something new from my son. 

 

It's a Jungle Up There

"Um," he says approaching me gingerly in the kitchen.  I continue loading the dishwasher, waiting to hear what is clearly a matter of importance.  "I was wondering..." He is so predictably unpredictable these days that I have no idea what this is about, but I have an inkling that it might be one of those moments.  "Yes," I respond, continuing with my task.  "Just listen for a minute," he says, anticipating some resistance, "before you say no. Okay?" "Okay," I say, feeling like I am giving away a right I may well need to exercise in the near future.  I rise up from the dishes and give him my full attention.  "You know how Anna is sleeping over tonight and the girls are going to sleep in the guest room? I thought it would be a good idea if I got to sleep in there with them tonight."  I go to respond but stop, remembering how I promised to listen.  This is going to be a hard one I think.  He wants so badly to be able to "play" with Tova and her friends, but does not quite appreciate the needs of an older, teenage sister.  To him, inviting her to play with he and his friends is absolutely equal to the reverse.  But clearly, it is not.  The necessity of talk, manicures...it just requires a kind of privacy he will have a hard time comprehending and one that I feel the need to respect.  "I get it, Dec," I say, but already my tone has given him a clue to my response.  "Mom" he states firmly.  "Yes," I echo firmly.  "Just don't get me started."  There's the smile.  There's one in practically every exchange.  It's the moment when he says something that throws me.  It can be a word, a phrase.  A try, a misnomer, but nonetheless a beautiful attempt, with no fear of failure I might add, at new language.  "Just don't get me started," he repeats for emphasis.  He's heard it repeated like that somewhere before, I think, and he's seeing if it will get him the floor again.  I give him the floor.  "I could make a bed on the floor and I could sleep in there with them.  I think that will work.  I'm serious."  No mistaking how serious this boy is.  "Dec, the bed is so small and the girls need their privacy," I say, not enjoying the answer I need to give him.  I'm a sucker for not wanting anyone to feel left out.  "How about if I ask them," I say, "but only if you think you can hear the answer 'no' if that is what their answer is."  "I know.  It's just when I feel so angry...when I feel the grrrr...," his face is in a snarl and his fists are pumping downward toward the floor, "I will stop myself.  Like this: gr..." And he stopped himself.  I'm watching him.  He is performing the late night entertainment and doesn't know it.  "Okay, I'll ask," I agree.  Then he throws out the punchline.  "Yeah.  I think you should ask them.  It's just that I'm really getting tired of risking my life up there every night." 

Dear, Dear Therapists

Dear Therapists,

This vacation we braved Great Wolf Lodge and its enormous indoor water park.  Have you ever been there? Think airplane hangar filled with every variety of water play apparatus.  Water slides, pools.  Wave pools, water fountain pools, basketball hoop pools, pools for riding clear round tubes along circuitous currents.  It's really a therapist's dream.  I could see each and every one of you working your way through the park with your tiny charges.  I can just imagine some of you working on forging the path for new language.  "Water!" "Splash!" "I want."  "Can I have a turn?"  "What is your name? My name is..." And it's an occupational or physical therapist's dream really.  A million opportunities for fine and gross motor work, and forget the obstacle course possibilities. 

The last time we were here, we encouraged Declan to try out the medium-sized water slides, the kind you hop on without a tube and are short enough if you change your mind half way down.  Tentative, he went for it anyway.  He sat right down in the rushing water at the top of the slide and let 'er rip.  Tova cheered him on at the bottom.  I held my breath.  Hope he likes it, because there's nothing I can do about it now.  The smile at the end was all we needed to see to know that it would not be his last ride.  "I want to go again!" "Okay!" I say, pointing him toward the stairs that lead back to the top.  Flights of stairs are stacked on top of each other.  They go in different directions and sport all kinds of water toys, squirt guns and buckets; but eventually, they lead back to the top of the slides.  That is, if you don't go in the opposite direction across the one bridge that connects these stairs to another section of the park.  Even so, getting to the slides seems intuitive.  You can see where the slides are as you climb, so you can inch your way toward them despite the distractions on the way.  But that time, years ago, Declan didn't and while I watched him the entire way from the bottom of the slide, the people crossing in front of him and the structure of the equipment eclipsed my view enough to lose sight of him.  I started to chastise myself for letting this happen.  How could I set him up like this? There's so much that is required to get to the slides.  My mother's scan could not find him and I finally went to a lifeguard for help.  Well equipped for this task, they put out an all-call for a little boy, six, in a blue and green bathing suit.  Declan soon appeared with a lifeguard by his side, looking extra nervous.  It was his first "Remember when I got lost?" scenario.  I ached looking at his little face, brows working extra hard to hold back the tears.  "It's okay boo-boo," I said hugging him, trying to convince myself too, "you were safe the whole time." 

That was last time.  This time, Declan was still very excited to return.  The experience did not keep him from wanting more.  In fact, we have come to refer to the place as GWL around him in order to avoid the rash of questions about the next time we could go.  Pretty cool he still loved going there, right? In the past, when he was younger, it might have become another place we would have to avoid.  Remember how tentative and reluctant he could be? Progress, people, progress! Well, this time, the first part of the park he approached was the lily pad pool.  I watched as his friend Jasper crossed the series of leaf-shaped rafts toward the opposite side of the pool.  A net made of rope hung above him, and he used it like a monkey bar as he hopped from one pad to the next.  He had to work to keep his balance because the lilypads, each anchored to the bottom of the pool, were still very precarious and unpredictable.  They tipped and turned each time his weight shifted.  I worried how well Declan would be able to navigate this and whether he would become frustrated.  Recently, when he struggled to climb a tree that his peer easily navigated, he got very angry and upset.  I started to make a list in my head of the skills required: executive function (the ability to plan ahead and sequence the steps that need to be taken), motor planning (the brain's ability to tell the body what to do and with which parts), speech and language (the inner voice to coach oneself along), balance...then I just checked to make sure there was a soft cushion for any possible head injury.  I know, have a little faith mom.  But I am, after all, a mom.  Jasper successfully made it to the other side and it was Declan's turn.  He didn't hesitate at all and grabbed a piece of net.  He took a step onto the first pad, and remained amazingly stable.  Abs, I thought.  Thank you physical therapists and hippotherapists!  Then he grabbed the next piece of the net without hesitation.  He knew what to do next, and the vestibular motions were tolerable. Thank you occupational and physical therapists! It was a long way to the other side, but he perservered, even enjoyed the new challenge.  Thank you SEIT's! Finally, he made it all the way across without a fall.  I waited for eye contact and threw my arms up in the air to congratulate him from afar.  He came running around to where I was standing and said to me, partly astonished at his own accomplishment, "I'm so good at it!" Thank you speech therapists.  Thank God for therapists.

Love and tremendous admiration,

Jennifer

Best Inclusion Practices

 
As an educator, I was determined to scour the city's schools for the best possible setting in which Declan could learn.  For many families whose child is struggling with seizures, this is an enormous hill to climb.  Many children with epilepsy have one or more developmental delays and/or learning issues, and req uire some form of support to reach their optimal potential.  I have learned so much along the way and would like to share what I have learned with you.  I will tell you the sinuous route we took with Declan in the hopes that you will get to where you need to go faster. 

When Declan entered preschool at the age of three, we managed to have his SEIT (Special Education Itinerant Teacher) from Early Intervention go with him for the entire school day.  This was an incredible arrangement, as Dec had his own special educator adapting the curriculum and encouraging language and social skills as the teachable moments presented themselves.  If we could have, we would have continued with a SEIT for his entire school career; but because it is a costly solution, the Board of Education was not willing to continue the service.  As a result, when Declan turned four, we chose to send him to a private center-based school.  The school was gorgeous, had all of the amenities, all of the therapists, and two teachers per classroom.  Declan had his worst year ever.  Why? We learned that he needed to be in a classroom with strong peer models.  In the center-based school, he was only with children with similar or more severe issues, and no one but the teachers were able to demonstrate strong social skills.  At the end of that year, we took him out and never looked back.  We knew from then on that we would never place him in a setting that did not have typically developing children to help Declan to see more typical academic and social behaviors.  When he was five, our argument was adequate for placing Declan back into a regular ed room, again with a full time SEIT.  It was not easy to get, but we pushed hard for it.  The decision paid off, and Declan had a much more successful year year.  Not only did he accomplish more academically, but he was able to have playdates with peers who could teach him a few things about play.  When it was time for kindergarten, however, we were back to square one.  We were no longer dealing with the CPSE; instead, it was the CSE we had to contend with, and they were very unlikely to allow a full time SEIT.  That is when we turned to a CTT classroom, and that is one of the main ideas I would like to leave with you today.  

CTT stands for Collaborative Team Teaching.  This is a classroom that has both a regular education and a special education teacher in the room full time, and approximately a third to a quarter of the students have IEP's.  The rest of the children are typically developing students.  This is the golden standard of inclusion practices right now, and it is tremendously effective.  Many people who hear about it for the first time are skeptical.  For instance, parents of a regular ed child placed in a CTT room might ask, "How will my child be challenged in such a classroom?"  And the parents of a child with special needs placed in a CTT room might say, "There is no way my child's needs can be met with so many different learners in one room."  I have been a parent and a consultant to these kinds of classrooms for many years, and I can safely say that by the end of the year, these parents are often the same ones we find actually requesting a CTT room for their children in subsequent years.  What they don't know and quickly learn is that the teachers in a co-teaching classroom become absolute masters of differentiation; that is, they are able to meet the needs of every child regardless of where they are because they have the resources and training to do so. Further, these rooms, given the nature of their diversity, end up having the kind of classroom community that neighboring classrooms come to envy.  I could go on talking about co-teaching for a very long time, and will talk about it again in the near future, but for now, take a look for yourself.  I suggest you visit the ASCD website.  ASCD is an organization that all good educators will know.  It's very role is to help advance best practices in educating every learner.  Here's the link:  http://www.ascd.org/

Siftables

When I attended the Eagle Hill Symposium last spring, I was taken with all of the ways in which the school was using technology in order to provide access to the curriculum for different learners.  As teachers, we need to find for our students the best way to get new information in, and then the best way for the students to get the information out in order to show us evidence of their learning.  Traditionally, this would be the teacher lecturing to some degree, then the students telling back what they have learned either orally or in writing.  But what about the child who has difficulty taking in spoken language (i.e. receptive language disability), the child who has difficulty organizing their thoughts (i.e. executive function issues), or the child who struggles with expressing their learning verbally (i.e. expressive language disability) or in writing (i.e. dysgraphia)? There are some remarkable tools out there that are emerging as technology gets more and more sophisticated.  Did you know, for instance, that a variety of over 50,000 books can be read to a student using the site bookshare.org? In this post, I wanted to get everyone's imaginative juices flowing with a very new technology that has not yet made it into the schools.  Just imagine what we might do for different learners with something like siftables.  Take a look at the video below:

Music Therapy

We met our first music therapist when Declan was in the hospital for his first round of surgeries.  Skeptical when she first walked into the room, I was fast won over by her ability to engage and calm him.  They sang together as she played on her guitar, she gave him instruments to play along, and one time, after hearing that Dec was taking piano lessons at home, she arranged to have a keyboard brought to his bed.  What was so interesting about her work was the way that she was so completely tuned into Declan.  Rather than guiding him, she would "lead from behind," and let Declan's choices and actions guide her.  For many subsequent visits, we actually sought her out and invited her to visit Declan in his room.  The pediatric floor at NYU Langone actually has a full time music therapist whose job is to not only engage children in positive, fun, and meaningful ways, but also to promote wellness, help manage stressful situations, alleviate pain, help patients to express themselves, and to promote rehabilitation.  We now have a music therapist come to our home to work with Declan once a week.  I am still learning a lot about the effects of music on the brain, but from my more recent research and experience, I am learning that music can have a positive effect on so many issues that occur with people with special needs.  Judy, Declan's music teacher from Connecticut Music Therapy, tends to work with Declan on his auditory processing, expressive and receptive language, executive function, sensory integration, memory, and sequencing, while also teaching him to read music and learn to play different instruments.

Take a look at the video below about music therapy.  It was created by the Berklee College of Music:

Bruce is Knitting

 
It is a typical school night.  Dinner is on the stove, the kids are reluctantly doing their homework, and the buzzer from the laundry washing machine is sounding repeatedly.  I run upstairs to transfer the wet clothes into the dryer and the phone rings.  I answer and find that I need to run downstairs to pull up the calendar on my computer to confirm the doctor's appointment I am being reminded about.  I type in the appointment, check on dinner again, and on the way back up to the laundry room, acknowledge our dog. Bruce, now one, still likely does not have a handle on the flurry that is our household.  Our old soul sits there, seemingly exhausted just by watching us, and wags his tail back at me.  Declan, attempting to do his homework without my help, is losing focus as he listens to me talk to the dog.  As I run back up the stairs, I hear him engage his furry companion.  I will have to go help him get back on track I think.  When Tova meets me in the upstairs hallway to ask me a question, we hear the ruckus of Declan's play downstairs.  He is playing with Bruce, but I wonder if he is encouraging the wrong behaviors again.  He has a tendency to get the dog all wound up by waving his hand around Bruce's mouth.  "Don't do that Dec," we have explained in the past.  "It will encourage Bruce to nip at us, and we don't want him to think that it's okay."  Enthused by the initiative one time, Declan made a sign that read "No Biting," and hung it above the spot where Bruce likes to sit.  When Bruce proceeded to eat the sign, Declan simply could not contain his laughter.  The moment, it seemed, was the absolute height of humor for him.  Since then, nipping and biting have been popular topics for him to mull over, and every once in a while, he will test whether Bruce will still take the bait.  This time, he seemed to be doing just that, and predictably, we got the newsflash.  As Tova and I spoke upstairs, we could hear Declan yelling something up to us.  While we could tell from his tone that he was distressed in some way, we could not quite make out what he was saying.  "What Dec?" Tova called after him, moving closer to the top of the stairs.  Declan, meeting us half way up the stairs informed us with a very serious and concerned face, "Bruce is knitting again!"

Tova and I looked at each other, trying to hold in the smiles, both knowing right away that he was using the word "knitting" in place of "nipping."  We know that Declan has difficulty processing the words that he hears and that often, his speech reflects it.  In moments like these, it takes everything we have not to collapse into our own fits of laughter, as the image of our 90 lb newfie/lab mix secretly knitting scarves behind our backs is just too much to resist.  

To learn more about auditory processing disorder, take a look at this excerpt from the website http://kidshealth.org/

Auditory processing disorder (APD), also known as central auditory processing disorder (CAPD), is a complex problem affecting about 5% of school-aged children. These kids can't process the information they hear in the same way as others because their ears and brain don't fully coordinate. Something adversely affects the way the brain recognizes and interprets sounds, most notably the sounds composing speech.  Kids with APD often do not recognize subtle differences between sounds in words, even when the sounds are loud and clear enough to be heard. These kinds of problems typically occur in background noise, which is a natural listening environment. So kids with APD have the basic difficulty of understanding any speech signal presented under less than optimal conditions.